Week TwentySunday, April 13, 2003
Weight: 9 lbs 3 oz. (4156 grams)
Feedings: On demand bottle feedings of 24 cal formulaBailey now weighs nine pounds!Bailey had a great day today. She
is still handling her feedings very well. She drank 94% of her
daily required volume and didn't spit up at all. Her oxygen was at
.75 liters per minute delivering 35% oxygen for most of the day.As can be seen in the pictures below,
Bailey sat in her car seat for the first time today. The hospital
requires all NICU patients go through what is called a car seat trial
before they can go home. If you live outside of Utah Valley the
baby must sit in a car seat for 1 hour without any problems in order to
pass. Because Bailey lives inside Utah Valley she only had to sit
her car seat for 30 minutes in order to pass. She passed with
flying colors. The last picture is of Bailey making "oh lips."
Bailey's occupational therapist told us that babies make this face when
they want you to interact with them.It was strange tonight as we started to
say goodbyes to some of the people at the hospital that we thought we
might not see again before Bailey goes home. We have looked
forward to this day for a long time, but we have also grown to know many
of the hospital staff very well. It will be fun to have Bailey
home, but it is never easy to say goodbye to friends. Sure, we
might see them again, but in all actuality we won't be seeing anyone for
a long time. Soon we will be home with a baby that won't be
allowed to have visitors and won't be allowed to go anywhere.

Monday, April 14, 2003
Weight: 9 lbs. 9 oz. (4332 grams)
Feedings: On demand bottle feedings of 24 cal formulaBaileys weight gain seemed excessive
today. I wouldn't be surprised if something was wrong with
Bailey's scale and that tomorrows weight was lower than 4332 grams.Bailey continues to do very well.
In fact, we are scheduled to room in with Bailey at the hospital
tomorrow night for a 24 hour period. Then we will take her home
Wednesday night. I will take Thursday off work to be at home with
my family for the first time.Bailey was changed to 100% oxygen with
a trace flow. This is the last step before she can go home.
Tomorrow night someone from home health care will come by and teach us
how to use the apnea monitor and portable oxygen tank that Bailey will
go home on. I can't believe that she comes home on Wednesday!!!The pictures below were taken about a
week ago, given as a surprise to us by the nurses a few days ago, and
given to us on a computer disk today. Now I am sharing them with
all of you. For those of you who are not STAR WARS fans, she is
dressed up to look like Princess Leah. Although I thought it was
cool, this was not my idea. This was totally a nurse idea. I
like the picture were she is asleep with her light saber.

Tuesday, April 15, 2003
Weight: 9 lbs. 3 oz. (4168 grams)
Feedings: On demand bottle feedings of 24 cal formulaToday was the beginning of a new time
in our lives. Last night was the last time we will ever sleep
without the responsibility of caring for a child through the night.
Everything that will happen in the next few days will be welcome changes
in our lives.At 7:30 PM this evening, we met with an
individual from the home healthcare company at Bailey's bedside.
He explained to us how to use the apnea monitor and the portable oxygen
tank that Bailey will be attached to 24 hours a day until her doctor
decides she doesn't need them anymore. I was a little surprised
that her oxygen was set at a flow of .5 liters per minute, but I'm sure
they are just playing it safe for the time being. I'm sure that
Bailey's' pediatrician will lower the flow soon.After we signed our lives away for all
the equipment, I gave Bailey a bath, fed her, and dressed her.
Then the nurse weighed her. You can see from her weight today that
there was a problem with the scale yesterday. Next, we said some
more goodbyes to our friends in the NICU, hooked Bailey up to all of her
portable devices, and wheeled her out of the NICU, down the hall and
into sleeping room #1.The first picture below is of Bailey's
last moments in the NICU. The second picture is of us pushing
Bailey down the hall away from the NICU never to return. It is a
little strange to think that after we go home tomorrow we can no longer
go back into the NICU without getting permission from someone. The
third picture is of Stacey standing next to Bailey's crib in our
"rooming in" room. You can see Bailey's portable tank in the
foreground of this picture. The rooming in room is similar to a
hotel room with a bed, bathroom, and refrigerator. At first we
were sad that there was no TV. I even went home to get my laptop
and some DVDs so that we could watch movies. Little did we know
that all we would want to do is sleep.

Bailey was very interested in her new
surroundings. As we pushed her down the hall, she didn't make a
sound and her eyes slowly scanned everything around her. The first
picture below is of Stacey holding Bailey in front of Bailey's crib.
The second and third pictures are of me holding Bailey while lying on
our bed in the rooming in room. I waited twenty weeks to hold my
daughter while laying down. It felt great! For twenty weeks
I have sat in a chair and held my daughter. I look forward to
taking naps with Bailey on the couch as soon as we get home.

The night went well. We took
turns getting up with Bailey through the night and I left at 6:45 AM for
7:00 AM meeting at work.Wednesday, April 16, 2003
Weight: 9 lbs. 1.5 oz.
Feedings: Bottle feedings of 24 cal formulaIt was hard to concentrate at work.
I wanted to be at the hospital with my wife and daughter but I had
meetings all day that I needed to attend. It became even harder to
concentrate when Stacey called me at 10:00 AM and told me that Bailey's
doctor said we could go home at any time. Word got around at work
that my daughter and wife were waiting for me at the hospital to go
home, and I was told that I could skip my afternoon meetings. I
scrambled around for a couple of hours to finish up things I had to get
done before I left, and left work not to return until Friday morning.
I stopped by school to briefly meet with a professor about publishing my
thesis, ran home to clean up the car and change, and then hurried over
to the hospital.When I arrived at the hospital I
hurried and started loading things into the car with the help of
Stacey's brother. I was anxious to get home. Stacey got
Bailey dressed and I took pictures of her "going home" outfit (the first
two pictures below). When the nurse arrived, I put Bailey in her
car seat (picture three) and we left.

The first picture below is of Bailey in
her car seat ready to go. She has gotten really good at holding
her bink in her mouth all by herself. On our way out, we went by
the front desk of the NICU to say our last goodbyes (second picture).
The third picture below is of the nurse carrying Bailey out of the
hospital. This was Bailey's first time outside. For
insurance reasons, parents aren't allowed to carry babies out of the
hospital. This was disappointing but we were so anxious to get her
home it didn't really bother us.

The first picture below is of me
putting Bailey in the car. The second picture is of Bailey in the
car ready to go. I drove home and Stacey sat next to Bailey in the
back set. The drive home was emotional as we could hardly believe
that we were taking her home. It was such a relief to be out the
hospital, that four months of frustration finally found an outlet.
I almost had to pull over because I couldn't see the road. We were
so happy. When we got home, Bailey was asleep so we put her in her
crib for the first time. As you can see in the third picture below
she didn't stay asleep for very long.

Stacey picked her up and sat in our
glider with Bailey for the first time (first picture below). While
Stacey was holding Bailey, home health came and setup and huge oxygen
tank in Bailey's room and dropped off another portable tank. After
feeding Bailey she went into her swing for the first time (second
picture). Bailey was paid a visit from her home health nurse who
will come back once a week to weigh her and take all of her vital signs.
Sometime later in the evening I caught Stacey napping with Bailey on the
couch (third picture).

The pictures below are of Bailey's new
medical equipment. The big tank in the first picture is about 3.5
feet tall and has a 50 foot tube that we can use while we are at home.
The smaller tank in the same picture is of her portable tank. The
second picture below is of Bailey's portable monitor. It has to be
plugged in when we are at home, but will last for about 8 hours between
charging. Her monitor hasn't made a single sound since we brought
her home.

Thursday, April 17, 2003Last night went well. Bailey woke
up every two to three hours to eat during the night. We are a
little concerned that that she isn't eating enough, but we will continue
to do what we were told to do and see if she starts to eat more.We slept lightly during the night.
I'm sure all parents do, but we have a very specific reason why.
Because Bailey is no longer on a saturation monitor, there is nothing
that beeps to inform us that Bailey is not getting enough oxygen.
Because Bailey quite regularly knocks her cannula from her nose and we
have no machines to inform us of this happening, we have to check it
regularly. It is a little unnerving, but I'm sure we will adjust.This is the last daily update I will
make. From now on I will do weekly updates until Bailey is off her
oxygen and monitors. Look for these updates on Mondays.
Thanks you for everyone's love and support but please continue to pray
for Bailey, she is not out of the woods yet.